These past few months I’ve spent a lot of time thinking about Rowan. Oddly I’ve not really wondered at all about what happened or why… just figured if it was while under the care of the hospital it was somehow inevitable and nothing could have been done to avoid it. In hindsight, how completely naive and ridiculous to assume that. To learn that it was not at all inevitable, and in fact completely avoidable- terrible. I don’t know if losing your baby boy could be made worse but this might just do it.

Like you so eloquently stated, doctors and hospitals are important institutions and usually good people at heart, and mistakes happen. Given that, I’ve learned a lot from this.
– First and foremost, as parents we are always the most important protector for our kids. Always. Do your research and be the advocate. Of course most of us parents don’t have the ability to research to the level necessary to make truly informed decisions, we just do the best we can.
– Second, if I need to reach that first conclusion, the system is broken. Transparency and admitting that everyone and everything is fallible would absolutely make for a safer medical profession. Why can’t we have that? Is it the huge fear/cost of lawsuits? I wonder if your doctors want nothing more than to talk with you but aren’t allowed to? If this is in fact the root of the problem, how to fix it? Seems that I have more question than answers.

When my daughter broke her femur last year she ended up at the hospital and went under general anesthesia for the procedure to set the leg. I was very uncomfortable with everything to do with it but remember thinking I had to just hand over my child and trust. I guess I’m telling you this story because I might have an inkling of what you felt, being convinced to let Rowan have the anesthesia and MRI. You swim against the current for a while but then the current gets stronger and you turn around and go with the flow. And you were fighting a very strong current for a very long time. (This is not a knock against the hospital, in my case they did fantastic work, just that I can sympathize with what you were faced with).

My last comment is that in addition to being upset, I’m enlightened. Reading about Rowan I was surprised by how many tidbits were new to me. Also eye-opening to read your telling of having a special needs child, his diagnosis, your view on your lives together and your future together

Thank you for sharing Rowan’s story with us. Matt and I read everything- we smiled at the photos and cried for your loss. I pray for your family daily and have added to my prayers that you will find the answers that you need and that Rowan’s doctor’s hearts will be open to talk with you honestly and openly and that they will see what needs to be done in this situation in the future. It is not easy to admit that you made such a life changing mistake and it will take a strong person to do so, but I hope that they can do it for Rowan.

For my part on trying to spread the word, I am adding William’s syndrome into my Anatomy and Physiology classes so that I can educate my pre-nursing and pre-med students about this condition and the dangers that are associated with anesthesia. I hope that they will remember it if they are ever treating a person with WS in their career and that they will pass it on to others in the medical field.

Thanks again for setting up this site. I can’t imagine how hard is it to write this down, but I appreciated that you told us what happened to Rowan so that we can be a part of this journey with your family.

My heart is breaking again and I have a lump in my throat as I write you this email. I’m now shedding tears. In the stillness of the night, I went through your entire website. I feel sad that you have lost Rowan and angry at the doctors. I wish I could have done something. Rowan was a beautiful boy and was loved very much. That was always apparent when I saw all of you together. I thank you for sharing his story, your love for him, and the challenge of what I’ll do. In the stillness of another night, I hope to figure out what my part in all of this will be.

We had never had the chance to meet Rowan and were introduced to him through your eyes from the day he was born. And what a beautiful child!! When we came to know about your loss, there were so many questions…The entire night went sleepless. But, I never thought that the cause was not inevitable. And it was something so basic for which we trust the doctors fully. Rowan and you all have been in thoughts since. Love and tight hugs.

I felt sad and very angry after reading story of Rowan. Being father of a daughter with DS, I have seen that this situation is many children with special needs. In fact your story reminded me that when our daughter was born with heart condition and later diagnosed with DS, we were recommended by doctors to not get her operated for heart repairing and let her die slowly. Later, when she was getting recurrent ear infection, we were told to remove her mastoid bone and not surprisingly, without any evidence that it was the cause of recurrent infection. Obviously, we did not agree and now she is healthy and very lively child.
In your case, I would recommend to go for civil litigation since it is only way for not only to wake up medical system but more importantly society to be aware of medical system.

Hi Nishant, Thank you for your thoughts. We have heard the recommendation for a lawsuit from many. We do think a lot about whether to file a lawsuit, and received valuable advice from a lawyer in regards to creating change. We feel that lawsuits can encourage defensive medicine, more secrecy in hospitals, and rarely elicit change. We have met many bereaved parents who filed lawsuits, won, and still feel years later that no change was made. For example, we now know of another child who died at anesthetic induction. That family filed a lawsuit, and then had to sign a confidentiality agreement when the lawsuit was complete. Could Rowan still be alive if their story had been allowed to be shared widely, and their hospital had been transparent? Probably. We believe, yes.
Yes, their lawsuit elicited change in one hospital, but it did nothing for Rowan just a few states away.
I think that this video puts a bereaved parent’s perspective into words far better than I could:Rowan’s mom

hello. knowing full well there is nothing that i or any of us can really do, i did want to provide you with some additional support should you need such backup in your efforts to wake up the medical community to their own myopia and overconfidence. We could use a bit more compassion, humility, and individualized consideration in our health-care system. Perhaps out story can join with yours and the others to collectively make a more persuasive case of a healthcare system in need of additional reform.

Our story is not dramatic (although it felt so at the time). Rather, ours is merely a situation in which we had to provide health-care expertise in the absence of the medical field’s ability to properly interpret data available to them. where we can contribute most, i think, is that our situation was not an uncommon syndrome or circumstance… our situation was at the very center of medical conventional wisdom and practice–and yet, the medical establishment was ill prepared and ill-informed.

our first child was a c-section. our second, we hoped, would be a vbac (vaginal birth after cesarean). Our obstetrician presented us with the data that demonstrated, to his field, the high-risk nature of a vbac. He told us he simply would not be party to a vbac and if we were to go that route, we would need to find another doctor (we were in our 8th month). we went on to the various sites including the American Congress of Obstetricians and Gynecologists (ACOG) and to the exact scientific articles that were being used by ACOG to support their designation of the vbac as high risk. As we dug deeper, we began to question the conclusion presented to us. As professional (PhD) researchers, we had the wherewithal to go more deeply into the data of the published works and the more we dug, the more we began to reconsider the conclusions drawn from the data. We wrote directly to medical researchers (including, as i recall, those who wrote the cited papers) and began to unravel an alternative interpretation of the data. we found that the formal, official conclusions (in general) were exactly the opposite of what the data revealed to us: reanalyzing the data we determined that the data suggested that a second c-section was a higher risk than was a vbac (the opposite of the medical establishment’s official conclusion). When we communicated our findings to our obstetrician, he angrily reminded us that he could no longer work with us unless we planned a second c-section. Additionally, no hospital in our local region (of San Bernardino County) would accept us as a vbac patient. Thus, our choice was clear: unnecessarily increase the pregnancy risk by following the doctors’ advice or go it alone (with a midwife). we found a place (near the hospital should something go wrong) and had our child there as a vbac. Ironically, coincidentally, the week (I’d have to recheck but I even think it might have been the day) of our second child’s birth, the news came out that the ACOG would officially downgrade the VBAC from a high- to a low-risk pregnancy thus opening up hospital doors and calming otherwise distraught doctors.

The take-home of this vignette is that patient concern/knowledge was irrelevant to the medical establishment’s deliberations. In our case, the factual correctness of our informal medical assessment was of no use to an industry that does not recognize the growing capacity of patients to engage meaningfully in an intelligent dialogue towards a personally-appropriate medical assessment.

Please know that i bring this up because you might find a similar (in terms of the medical industry’s hubris) story about something as “normal” as child birth supportive for your efforts to bring additional maturity to our health-care system. If we can be of further support to you, contact us as you wish.

Hi Peter, Thank you for sharing your story. Rowan’s birth was also a healthy vaginal birth after cesarean, for which we continue to be grateful to our obstetrician. His hands-off approach, experience, and confidence in putting our family’s concerns and wishes above hospital policy allowed us to have a beautiful birth experience and a wonderful memory to hold onto. Rowan’s mom

So very sorry for your loss. I signed your petition, as I believe you have both the moral and legal right for action to be taken against the incompetent medical team that “advised” you. You were not given the required information in order to make informed consent in your son Rowan’s case [in which case you would have said NO to it].

I miss your wonderful little boy who always made me happier, and I’m so sorry for your loss. As the father of a child with Russell-Silver syndrome, I’ve also occasionally encountered doctors who minimize my very real concerns and who disregard information that I try to give them about my son and his syndrome. I wish you the best of luck in your attempts to effect change and get the doctors and hospital to take responsibility.

I am sure most of us have experienced the feeling… “Why does Facebook think I may know this person?”

That thought came to mind when I saw Rowan on my screen. I had time to spare while waiting for a delayed flight, so I decided to take a look. That led me to http://www.rowansmile.me

I began reading Rowan’s story, still unsure how I knew him. Then it sunk in…

Rowan is the son of one of the kindest people I’ve known: Rowan’s mom, Tracey.

Words cannot possibly express how sorry I am for your family’s loss. I cannot imagine what you have gone through, and what you continue to go through.

Even though I was never fortunate enough to have met Rowan, the stories and photos on the website reveal him to be an amazing person. He is clearly part of an awesome family filled with much love and happiness.

Many years ago, I took a drive across Florida with Tracey to see the Atlantic Ocean. When we reached the coast, we got out of the car and looked down into the water. There was a sea turtle looking up at us. It was an oddly magical and happy moment, and the type of experience which Tracey’s current friends are surely used to experiencing when she is around. Tracey is the kind of person who spreads happiness everywhere she goes. Even sea turtles go out of their way to become her friend 🙂 That infectious personality is surely a big part of why Rowan looks so happy in all his photos.

It saddens me greatly to see her and her family experience such a senseless loss, but I am encouraged to see that loss turned into a very positive effort to share Rowan’s story through this site.

As parents to our own child with special needs, my family will ensure Rowan’s message is shared with all of our contacts. We will also make a donation in his honor to the Special Olympics.

Good to hear from you. Thank you for reaching out, and for such a thoughtful message.

I remember that pleasant adventure to the Atlantic very well. It made me think of when Rowan met his first sea turtle, watching it swim as he bounced up and down with excitement. They are both very happy moments to remember, and both brought me a big smile.

Rowan shared both my passions for adventure and wildlife, and I was so lucky to experience such joy in every day that I spent with him. I am thankful to know a bit of that joy reached you and your family.

Rowan was killed at a renowned children’s hospital as a direct result of the careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure .. against his mother’s wishes.

Want to help make a difference? Visit How To Take Action to speak out against medical negligence and special needs discrimination in healthcare.
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